Need some help and guidance with NOT being diagnosed with Autism.

Hi everyone, 

Im in a bit of a panic here so I am hoping someone can help me.

Ive got a child of 2 who at 6 months old went through major heart surgery, she was a normal smiley happy baby. When she came round from surgery she was still very groggy and when I went to touch her she recoiled back in horror and there was something amiss for a while after that. I put it down to her being traumatised from the surgery and the pain afterwards. We had to hold her back doing alot of things a normal 6 month old would be doing at that age like rolling, sitting up etc.... I think she didnt trust me for a long time afterwards and its took us a long time to build that bond again. I have always known she has been a bit behind and I do blame the op, but she has excelled at everything like walking, crawling, getting up stairs eating etc the only thing that is a bit off is her eye contact and talking. She is nearly 3 and can say 5 words. She knows what she wants and will take you to it but she is just refusing to say most things. Yet she will make sound like words. Her eye contact is getting better. She is in daycare for 4 hours a day and has lashed out twice bit and pulled hair. She understands what you say to her, mostly. She attempts to get heself dressed. 

So the daycare tried to say she had trouble eating (rolling stuff round in her mouth, or holding food in there before swallowing) we had someone look at that as we have never experienced this problem with her and the peditrician agreed with us there was no problem at all.

We were recomended to go see another peditrician at the hospital we went to the appointment the other day and at this 20-30 min appointement he is wanting to get her looked at for Autisim which I think is ludicrous! All because she didnt give him eye contact?! Over the next 3 months he will be sending people out to assess her and report back to him. 

I felt he wasnt listening to me when I was saying that she was just delayed and I needed help for that. He was more concentrated on Autisim. 

I need some help to fight this as I dont know where to start, I know my child has not got Autisim, she is slow but does not have Autisim. Im going to fight this all the way but in the mean time I need to know what help I can get and who from for a child who is delayed. The peditrician said he cant offer me any help till he gives a diagnosis, is this right?

So sorry for the long post guys xx

Parents
  • Former Member
    Former Member

    Hi songwriter,

    I have no problem with the statement "He/she has the traits and symptoms associated with autism, but doesn't have autism". I have a diagnosis so I "have clinically diagnosable autism" i.e. the triad of impairments to the extent that a specialist can recognise the condition in me and give me a diagnosis that gives me the protection of the equality act and other measures. I self-diagnosed to begin with but needed an official diagnosis as I was continually encountering confrontations and arguments at work. This is an emotive issue and people have different concepts of what autism means to them. I don't know if you would get a diagnosis or not but I have no issue with us both being on the spectrum and both having similar traits as it is a spectrum and varied thing. hence "If you have met one person with autism then you have met one person with autism".

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  • Former Member
    Former Member

    Hi songwriter,

    I have no problem with the statement "He/she has the traits and symptoms associated with autism, but doesn't have autism". I have a diagnosis so I "have clinically diagnosable autism" i.e. the triad of impairments to the extent that a specialist can recognise the condition in me and give me a diagnosis that gives me the protection of the equality act and other measures. I self-diagnosed to begin with but needed an official diagnosis as I was continually encountering confrontations and arguments at work. This is an emotive issue and people have different concepts of what autism means to them. I don't know if you would get a diagnosis or not but I have no issue with us both being on the spectrum and both having similar traits as it is a spectrum and varied thing. hence "If you have met one person with autism then you have met one person with autism".

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